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Health : Medical Research (Grantmaking/Grants Payable)

International Rett Syndrome Foundation

Funding research for treatments and a cure for Rett Syndrome

four stars

91.16

4600 Devitt Drive Cincinnati, OH 45246
tel: (513) 874-3020   Web Site
EIN: 31-1682518

Board Leadership
William Babiarz
Chair

CEO
Melissa Kennedy
Executive Director

  Score
(out of 100)
Rating
Overall Score & Rating 91.16 four stars
  Financial 87.50 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 12/23/2020 and includes data from FY2019, the most recent 990 received at that time.

The International Rett Syndrome Foundation (IRSF) was established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association. IRSF funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort. IRSF also assists families of individuals living with Rett syndrome and advocates for and raises awareness about individuals with Rett Syndrome.

The International Rett Syndrome Foundation (IRSF) was established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association. IRSF funds research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services. IRSF coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort. IRSF also assists families of individuals living with Rett syndrome and advocates for and raises awareness about individuals with Rett Syndrome.

Financial

three stars

87.50

Accountability & Transparency

four stars

100.00

This rating was published 12/23/2020 and includes data from FY2019, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
88.6%
  Administrative Expenses 5.6%
  Fundraising Expenses 5.6%
  Fundraising Efficiency $0.05
  Working Capital Ratio (years) 1.11
  Program Expenses Growth -10.0%
  Liabilities to Assets 31.3%
All data for Financial Performance Metrics calculations was provided by International Rett Syndrome Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by International Rett Syndrome Foundation on recent 990s filed with the IRS.

Constituent Feedback

Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people/communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile.

Here's how this organization is listening and learning from the people they serve:
How is the organization collecting feedback?
Electronic surveys (by email, tablet, etc), Paper surveys, Focus groups or interviews (by phone or in person), Constituent (client or resident, etc) advisory committees
How is the organization using feedback?
To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve
With whom is the organization sharing feedback?
Our staff, Our board
What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback
Describe a recent change in your organization that resulted from feedback.
Note: This organization did not answer this question
This Constituent Feedback information is provided to us by Candid. At this time, Constituent Feedback information published on this organization's page has no effect on its star rating per our methodology.

Highly Rated

Charity Name & State Overall Score Overall Rating
International Rett Syndrome Foundation (OH) 91.16 four stars
Sabin Vaccine Institute (DC) 92.34 four stars
Lupus Research Alliance (NY) 91.28 four stars
National Pediatric Cancer Foundation (FL) 100.00 four stars
CURE Epilepsy (IL) 89.24 three stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,807,652
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $1,573,018
   Related Organizations $0
   Government Grants $528,881
Total Contributions $4,909,551
   Program Service Revenue $4,166
Total Primary Revenue $4,913,717
   Other Revenue $-131,397
TOTAL REVENUE $4,782,320
   
EXPENSES  
   Program Expenses $2,404,074
   Administrative Expenses $235,905
   Fundraising Expenses $258,130
TOTAL FUNCTIONAL EXPENSES $2,898,109
   
Payments to Affiliates $0
Excess (or Deficit) for the year $1,884,211
   
Net Assets $4,285,283

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research $1,861,284 77.4%
Family Empowerment $542,790 22.6%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 12/23/2020 91.16 four stars
2018-12 12/20/2019 85.85 three stars
2018-12 12/01/2019 85.57 three stars
2018-12 11/01/2019 83.85 three stars
2017-12 12/01/2018 91.42 four stars
2016-12 02/01/2018 89.39 three stars
2015-12 03/01/2017 87.34 three stars
2015-12 02/01/2017 87.16 three stars
2014-12 06/01/2016 87.43 three stars
 
CN 2.0
2014-12 02/01/2016 91.58 four stars
2013-12 06/01/2015 87.88 three stars
2012-12 04/01/2014 92.84 four stars
2012-12 02/01/2014 91.95 four stars
2011-12 12/01/2012 93.28 four stars
2010-12 02/01/2012 93.25 four stars
2009-12 09/20/2011 93.86 four stars
 
CN 1.0
2009-12 11/24/2010 91.32 four stars
2008-12 11/01/2009 94.86 four stars
2007-12 10/01/2008 94.41 four stars
2006-12 11/01/2007 89.30 three stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 31-1682518
Name in IRS Master File INTERNATIONAL RETT SYNDROME FOUNDATION
NTEE Code H12
NTEE Classification Fund Raising and/or Fund Distribution
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date March, 2000
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$165,908 5.72% Melissa Kennedy Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
International Rett Syndrome Foundation (OH) 91.16 four stars
Cure Alzheimer's Fund (MA) 98.23 four stars
Cystinosis Research Foundation (CA) 93.96 four stars
American Foundation for Surgery of the Hand (IL) 92.02 four stars
Hope & Heroes Children's Cancer Fund (NY) 88.76 three stars

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This charity has an official representative registered with Charity Navigator.

Constituent Feedback

This organization is sharing information on how they communicate with stakeholders to better inform your giving.

Charity Contact Info

International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati, OH 45246
tel: (513) 874-3020
fax: (513) 874-2520
EIN: 31-1682518

Visit Web Site

Board Leadership

William Babiarz
Chair

CEO

Melissa Kennedy
Executive Director

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